Sunday, May 19, 2013

Everyday I struggle with Guilt

Day 20, Monday: Get real. Share something you're struggling with right now.

Sometimes it is really hard to 'get real.' Don't you think? I am struggling right now with the day to day issues of taking care of an invalid husband at home. I get really pissed off at the whole situation at times. And then I feel guilty. I get mad at him when I am trying to help him up to the commode and by the time we get there he is already wet. And then I feel guilty. When I spend all afternoon cooking something for him, something that he used to love to eat, and now he either doesn't like it or isn't hungry, I get mad. And then I feel guilty. I hate feeling mad at him for things that I know he cannot help, but I AM mad. He needs to have everything his way. He needs to be in charge. He needs to control. And I feel guilty.

Yes, I know that all of this is normal. That it is all part of taking care of a loved one at home. That he isn't doing any of this on purpose. But that doesn't really help to know that. When I have done all that I can do for him at bedtime. I have toileted him. I have given him a snack. I have helped him get a drink. He is tucked in with the covers just like he likes them. The lights are turned down, just like he likes them. The TV is turned to the channel that he likes. And I finally, after a really long day, lay my head down and pull the covers up and I hear him say, "Honey, I need to go to the bathroom". Yes, I get mad. And sometimes I know that he knows that I am mad. And even though I know that he can't help it, that doesn't matter. I am mad. And I feel guilty.

And I am pretty sure that he can't help that he coughs all the time. That he coughs when he takes a tiny sip of water. And he coughs when he eats. And he coughs when he sleeps. And he coughs LOUD. I know he can't help it. But there are times that I put my fingers in my ears and beg it to stop. Just stop coughing for a little bit. I can't deal with all this coughing. And then I feel guilty.

The Hospice nurse comes each week. And she always asks me how I am doing. And I always lie and tell her that I am doing 'fine'. But I don't know if I can take this for months and months more. Today she said that it could be a really, long drawn out process. This dying process. I don't want him to die! I just want peace. Peace for me! Peace for him. Sometimes I think about what my life will be like when he is gone. And then I feel guilty.

I feel mad when others say "I know what you are going through" No, you don't! I am mad when others tell me that they think what I am doing is noble and loving. No, it's not! I am doing it because it is what I am supposed to do. It isn't what I want to do. But I love him. And I believe in honoring my marriage vows. I didn't do well with this the first time around. But I will this time. Until death do us part. And I will just go on feeling guilty until I figure out how else to feel. Now tell me, What do you feel guilty about?

16 comments:

I am glad you were honest Paula. I don't know what it is like to have to take care of someone like that. I do know the guilt that comes from anger though. I am here if you want to vent (you have my email). Here is something I struggle with: I don't know if I could ever do what you are doing with your husband. Being his caretaker. I can just say this: I can't imagine what you are going through, but I know it is the toughest thing right now. I have watched my mom go through this with both her parents and my husband with his dad. Both were huge parts in the caretaker role. I understand the wanting peace. I am thinking about you.

Paula, I am so sorry that you have to go through this daily. I know that it doesn't help to tell you that you aren't alone. But you are not. My mom and I speak of this daily, because of my stepfather (he was diagnosed with ALS). He is angry and mean and she has a hard time. Please remember that you are doing an amazing thing, that many other people wouldn't do.

Guilt is such a powerful emotion Paula. And I think that your honest about your frustration and your guilt and writing about it seems to be to be a good move as well. Venting is good.

To be honest I remember doing like you did with the nurse, you want to be polite with people since that's what we do so 'someone' says..."how are you?" so you say fine be polite when your insides are screaming something else completely!

And for me I used to think, do they want to hear the 'real' answer? Like, my kids are dead how do you think I feel? I don't think so. Don't get me wrong I had a great support system but after a while I felt like I was a burden to them.

It was such a relief to go see my therapist I'd walk in the door and he'd look at me with those eyes and say "Jen, how are you?" And I'd say, " like crap" or "my kids are in the cemetery what do you think?"

The man was a life saver. He helped me move thru my grief and worked with me on my emotional/relationship health.I felt good about myself/relationships,better than I ever had and my kids were dead how could that be? Talk about guilt, it was terrible.

Thing are funny Paula! With a bit of perspective I look back on 'that guilt' I say my kids are gone and I see my enhanced well being was their gift, a going away present to me so I wouldn't fall apart or be so sad until I see them again.

Helping my mother-in-law take care of her mother, I can relate. Every situation is different so I'm not saying the "I know what you're going through." I couldn't do much to help, and I felt guilty for that. But I knew she was getting tired and worn out from the care-giving everyday. Ironically (if you can even call it that) the day before she died I was planning a weekend away for my mother-in-law. Because I knew she wouldn't take time away for herself...I felt guilty for a little while after my grandmother died that I didn't help my mother-in-law more. Maybe you have someone in your life like that and can help them with that guilt and yours?

What honesty. What courage, to admit something most people would shy away from talking about. Both of my sons are special needs. My older son is an invalid, and my younger son is autistic. I have nurses for the one and aides to help with the other, so I know how lucky I am, but there are still those times in the middle of the night or the middle of the morning when something happens. My husband always expects me to deal with it. I get angry at him, and at the kids, and then I feel guilty about that. Stand strong!

Being a caregiver is the hardest thing ever. Being a nurse AND a caregiver--hardest thing ever squared. Be honest with the hospice nurse, my friend--you might be amazed at how she can help you. Putting up that "it's fine, I'm supernurse" front is going to just extend your agony, at least that's how I see it.

My guilt? It's all about my daughter, and my failure to be her mother for most of her life. Most of the time, especially since she got back in contact with me, I can let it go, but sometimes, when I least expect it, it rears up and slaps me in the face, and I just have to ride it out till the next time I can let it go.

Maya Angelou said "When you know better, you do better" Another of my favorite quotes. I think this applies to you and your daughter. At the time you thought what you were doing what the best for her and for you. I will try to talk to the hospice nurse. I think it will help

Paula, I sooo get this. When mom lived with me I was so angry and or short with her at times. I sometimes said things in anger to her out of total frustration - things I wouldn't dream of saying to anyone much less my dearly loved mom. She could push all my buttons. I was helpless at times and responded poorly. When I told a friend this, she said, "Well, of course, Elaine, she can push all your buttons. She put them there." How true.

And when mom finally went into Assisted Living and we had a family meeting to discuss how she was doing, I had nothing but praise for the staff in how they handled my calmly mom and others in frustrating situations, always respecting the elderly. I admitted that my mom (who I loved dearly and am totally devoted to) could drive me right out of my ever lov'en mind ... and the social worker very generously said, "Well, we have 3 shifts of workers to care for your mother, and you had just yourself." :-) I felt better after hearing that because I knew it was true. I still felt guilt and to this day still feel bad that she isn't here in my house with me!! But I know I am only human. Not a super hero or saint, but just a loving daughter who tried to do the best I could do, and discovered my best had limits .. because I was human.